MIND YOUR LANGUAGE!
People living with HIV and Aids face disease and death on a daily basis. But
isn’t it time to end all the critical and judgemental language used
against us, asks Martin Flynn?
When HIV and Aids was first identified in the early 1980s it became known
as the ‘gay plague’ and the tabloid press screamed about ‘immorality’,
‘The wages of sin’ or ‘Aids monsters’ in 60-point
banner headlines. But have things improved since those condemning newspaper
stories 20 years ago?
It seems we still face harsh language that expresses contempt and disapproval,
even though close to 60,000 people have HIV in Britain alone, and worldwide
over 40 million people are living with the disease.
Even in the last year a cursory review of British media coverage about people
living with HIV showed critical stories such as ‘Promiscuous 10 per
cent spread Aids’ and ‘Health tourists and asylum seekers rip
off NHS’.
Of course the groups most affected by HIV in this country, Africans and gays,
are perfect minority groups to be lambasted, criticised and abused by gutter
press moralists for the supposed ills and woes of society.
And it has become the norm for the media to harp on about the contrast between
the innocent victims of Aids, such as children or people who got the disease
from blood transfusions, and the guilty victims of Aids who brought the disease
on themselves by their immoral lifestyles or perverse sexual proclivities.
But it’s not just the ignorant and stupid who condemn us with their
language.
The respectable broadsheet press, TV and radio still refer to us, not as people
but as ‘sufferers’ or ‘victims’, as if we are not
human and can easily be pitied, shunned, criticised or abused.
Even the medical profession still manages to put the pejorative, if velvet-covered,
boot in. We’re patients, not people, as if the disease we carry defines
us and we have nothing else in our lives, bodies or personalities.
We are expected to ‘comply’ or ‘adhere’ to difficult
drug regimes at a rate of 90 per cent plus; that is not miss more than one
in ten drug doses, or we will ‘fail’.
It is a success rate of taking medications at the right times and in the right
doses which is not expected in any other group of people living with other
diseases. Indeed, among people with cancer or heart disease, taking 60 per
cent of drugs at the right time is considered not just acceptable but exemplary.
Many will remember the outspoken activist Henry Graheme-Smith getting up at
HIV conferences and reminding the assembled doctors: ‘It’s the
drugs that fail, not the patients.’
But then along came the term ‘forgiveness’, like some thunderbolt
from a prophet or pope, to describe new HIV drugs that remain concentrated
enough in our bloodstream to suppress the virus, even if we miss the odd dose
of pills.
Next a top British HIV doctor admitted openly that he did not explain possible
drug side effects to his patients in advance of treatment because patients
might suddenly have them by autosuggestion. As if we’d just dreamed
up nausea, diarrhoea, headaches, sleeplessness, lipodystrophy or peripheral
neuropathy, to name just a few possible toxicities from the medicines.
Then some other clever wag came up with the term ‘salvage therapy’
for those patients who had ‘failed’ on the other antiretrovirals
and we’re back in the moral dustbin yet again.
Don’t get us wrong, we’re not ungrateful about the wonderful life-saving
treatments we have these days or the impressive caring and intelligence of
our doctors and nurses.
We are lucky to be living with a fatal disease just at a time when life-saving
medications are becoming available. And it is preferable to that hopelessness
faced by millions of people with HIV living in poor countries of the world
who are dying in their thousands every day.
Compared to people with other diseases, like cancer, heart disease or arthritis,
to name just three, we have a better chance, as well as better facilities
and treatments within the NHS.
We simply ask the medical profession, and other supposedly intelligent members
of our society, to stop pigeon-holing us and to mind your language.
Perhaps then it might even trickle down to the seriously stupid who are always
on the look-out for scapegoats to blame or condemn.
